David Moody’s phone wouldn’t stop ringing. And everyone had the same problem.
“We started to get calls saying, ‘When are these guys showing up’?” says Moody, who was until June the chief executive of a peak body for national disability insurance scheme providers. “It’s fair to say that was the cry from providers for the next three months after. ‘When are they coming?’ It was clear something wasn’t working.”
It was the middle of March, a few months after the federal government promised the 27,000 people with disability who live in shared accommodation they would be at the front of the vaccine queue.
The plan was for “in-reach” teams contracted by the government to go into the so-called “group homes”, as well as aged care facilities, and vaccinate the residents. And it was already supposed to have started.
What Moody’s former employer, National Disability Services, and, more importantly, the disability community, didn’t know was the plan had already changed. Dramatically.
The government had, according to a bombshell royal commission report released on Monday, “de-prioritised” this group in favour of aged care residents, who’d been ravaged by Covid in 2020.
It then left people with disabilities, their advocates and providers in the dark about the decision until a Senate hearing six weeks later on 20 April 2021.
“I was absolutely livid,” Moody says. “I’m not suggesting the government isn’t entitled to make new decisions, but we were never consulted or advised.
“We’d had meetings with the then minister Stuart Robert in regards to those issues. All I can say is we did not appreciate being blindsided.”
Five months on, with major outbreaks in Sydney and Melbourne, the nation’s two largest states will end lockdowns this month when double-dose rates hit 70%.
While aged care and disability care residents were slated to enjoy the same priority access to the vaccine, the gap is stark.
Some 90% of aged care residents have received one dose. Among disability group residents, 67.5% are fully vaccinated, and 75.9% have gotten one jab. It means nearly a quarter remain unprotected.
Data obtained from the government reveals that coverage is patchy between states. In New South Wales, which is set to lift the lockdown on 11 October, 67.8% of disability group home residents are fully vaccinated. The figure is 75.6% in Victoria, but worryingly low in Queensland (51.6%) and the Northern Territory (53.2%).
Rates are better in Western Australia (64.9%), South Australia (63.3%) and Tasmania (67.1%).
“It’s devastating to see the state of the rollout right now, particularly as we move into this critical moment,” says the Greens senator Jordon Steele-John, who lives with cerebral palsy. “The health measures particularly in NSW and Victoria are changing. It is more important than ever that disabled people are vaccinated.”
Vaccine rollout ‘seriously deficient’
When the disability royal commission took the unusual step of releasing a draft report into the federal government’s vaccine rollout on Monday, it was aimed at maximum impact.
“I think it’s a desperate cry for help,” says Labor’s NDIS spokesperson, Bill Shorten. “I don’t know what it’s in their mind, but it’s the royal commission sending out an emergency flare.”
The scathing report labelled the rollout “seriously deficient”, warned governments against opening up at 70% if all people with disability hadn’t had the chance to be vaccinated, and pilloried the government over its failure to properly consult with the disability community or be transparent about its decisions.
The following day the secretary of the Department of Health, Brendan Murphy, was quizzed about the findings.
“I don’t accept there was a de-prioritisation,” said Murphy, who instead called it a “refocusing on residential aged care”.
“That has probably saved over a thousand lives in aged care, because all of our advice was that was the highest-risk population.”
Samantha Connor, the president of People With Disability Australia, was not impressed by Murphy’s response.
“I’m one of the people that’s at risk of dying of Covid,” she says. “It’s kind of a combination of rage and sadness and despair and despondency.”
‘A very at-risk group’
In early February, most disability advocates were pleased when the government included people living in group homes in phase 1a of the rollout.
“We know from international evidence they are a very at-risk group,” says Prof Anne Kavanagh, a University of Melbourne academic who has a multiple sclerosis diagnosis and a child with autism.
But the good news was short-lived. The royal commission’s report suggests the government included disability and aged care in the same priority group without a full appreciation of the major differences between the two sectors.
While nursing homes are often large and may have dozens of residents, NDIS group homes cater to between two and six people, and in rarer cases as many as 10.
The report also found Department of Health officials initially factored in that there were about 6,000 residents in disability care, rather than about 27,000.
By March, once the government realised the scale of the challenge, faced supply issues and what Murphy this week called the contracted vaccines providers’ “limited capacity and limited workforce”, it chose to focus on vaccinating the almost 200,000 aged care residents before winter.
But it didn’t let on that there had been a shift in priorities. When the prime minister, Scott Morrison, hailed Australia’s one millionth vaccine dose in April, he noted that already “125,260 doses had been provided to the aged and disability services for the residents”.
The data released by the government at the time also didn’t differentiate between aged and disability care.
In reality, less than 1% of all doses distributed between 22 February to 21 April 2021 went to people with disability, the royal commission said this week.
“For me there is no doubt we needed to vaccinate very quickly aged care residents and workers,” says Kavanagh.
“But given the size of the group home cohort, which is not massive, I don’t see why we couldn’t have been doing both. Or not delayed it as much.”
‘Immoral and inexcusable’
Julia Squire is the chief executive of Ability Options, one of the largest NDIS providers in NSW.
By April, Squire had seen media reports suggesting her clients, as well as her workers, had been shafted.
“I just thought it was immoral and inexcusable,” she says.
At her wit’s end, Squire wrote to the health minister, Greg Hunt, and the NDIS minister, Linda Reynolds, noting “one of our employees received her first Pfizer vaccination alongside the prime minister and is proud to be our local promotor for the vaccine”.
“Two months in, we now have, of over 700 people eligible, only [three] employees and 10 … participants have had the Pfizer vaccine in 1a,” she wrote.
As pressure slowly began to mount, the government insisted the rollout would ramp up in late April. But providers say they didn’t notice a change until at least May.
“It was completely radio silence from February to … the last week in May,” says Kate MacRae, chief executive of NDIS provider Able Australia.
“On one day in the last week in May, we rang [a government-contracted vaccine provided] 17 times without getting a single return call, and everything went to auto answer system.”
By this point, providers, as well as parents and carers, had started taking matters into their own hands.
Many still unvaccinated
Once the rollout expanded, they organised vaccines for their residents through local GPs and state health departments. Later, some of the larger providers pulled together disability-specific hubs with the government-contracted vaccine providers, Aspen Medical and Healthcare Australia.
Squire and MacRae say almost all of their clients have been fully vaccinated now.
But the latest data suggests 6,596 people living in group homes have still not received a single jab.
It’s acknowledged hesitancy is an issue, but the bigger fear is that the remaining unprotected residents are those who are most vulnerable, unable to leave their home to attend a vaccination hub. That is, those who require a home visit, as was originally planned all along.
Squire acknowledges that once the plan had been abandoned, a “free for all” developed.
“We’re a big organisation,” she says. “You’ve got organisations like ours that have swallowed up every bit of supply they can find. But that’s got to have an impact on others.”
While those who should have been vaccinated in phase 1a remain unvaccinated, advocates are also raising concerns about the wider disability population.
The data obtained by Guardian Australia shows 48.5% of NDIS participants 16 and over have been fully vaccinated, while 33.2% of those aged 12-15 have received one dose.
“The target shouldn’t be 80%, it should be 90%, and as close to 100% as you can,” says Kavanagh of people with disabilities.
“I’m really fearful now we won’t have the vaccination rates among people in both residential settings and also in the community at a time we’re going to be opening up with high caseloads.
“I’m terrified we’re going to see a pandemic in deaths in unvaccinated disabled people that could have been prevented.”